Advancing a Patient- and Carer-Centered Approach for the Clinical Development of New Therapeutics for Aneurysmal Subarachnoid Hemorrhage: Insights From a Qualitative Study.

Abstract

Aneurysmal subarachnoid hemorrhage (aSAH) is characterized by a high rate of fatality and high risk of secondary brain injury. More treatment options are needed to improve outcomes. There are very few reports in the medical literature involving patient experience of aSAH, which is known for its unexpected onset and profound medical impact. Improved understanding of this patient experience would help make future clinical research more patient centered. To this end, we convened an advisory board consisting of aSAH patients and care partners in the United States. Participants emphasized the critical role that care partners play during hospitalization and in accessing supportive resources and rehabilitative care. Recommendations included improving the accessibility of clinical research information during the consent process with sensitivity to the stress and cognitive challenges of patients who have had an aSAH. Participants also recommended prioritizing in-person - either on-site or at-home - as opposed to remote follow-up visits because in-person communication can be easier for those recovering from aSAH. Insights from this study could be invaluable for the clinical development of new therapeutics for aSAH and other acute neurological conditions, with the goal of better meeting the needs of patients and their families during clinical research participation.